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Directory of Organizations

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AbleData

Director: Katherine Belknap, M.A.
Information Specialist: Juanita Hardy
Address: 8630 Fenton Street, Suite 930
Voice: (301) 608-8998
Toll-free Voice: (800) 227-0216
TTY: (301) 608-8912
Fax: (301) 608-8958
Internet: www.abledata.com
Last updated: 2014 Apr 1

Description:
The AbleData project helps people who have disabilities, including communication disorders, by providing information about assistive devices, rehabilitation equipment, and other products for people with disabilities. Resources include a database of more than 40,000 products. A database of citations of books, articles, and other resources related to assistive technology also is available, along with fact sheets, brochures, and online publications. AbleData is sponsored by the National Institute on Disability and Rehabilitation Research.

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American Academy of Otolaryngology--Head and Neck Surgery (AAO-HNS)

Executive Vice President: David R. Nielsen, M.D.
Public Information Contact: Jeanne McIntyre, Director of Communications
Address: 1650 Diagonal Road
Voice: (703) 836-4444
Fax: (703) 683-5100
Internet: www.entnet.org
Last updated: 2011 Jun 30

Description:
The nonprofit American Academy of Otolaryngology—Head and Neck Surgery (AAO-HNS) strives to unite, serve, and represent the interests of ear, nose, and throat specialists and their patients to the public, government, other medical specialists, and related organizations. AAO-HNS provides leaflets and geographic lists of physicians to the public at no charge. Holds annual meeting; contact AAO-HNS for date and location. AAO-HNS provides a professional bulletin, journal, directory, books, and other materials. Professional/consumer publications are available online and in print, with some in Spanish.

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American Broncho-Esophagological Association (ABEA)

President: Andrew Blitzer, M.D., D.D.S.
Public Information Contact: Gregory Grillone, M.D.
Address: Boston Medical Center, FGH Bldg., 820 Harrison Avenue
Voice: (617) 638-7934
Internet: www.abea.net
Last updated: 2011 Jun 30

Description:
The American Broncho-Esophagological Association (ABEA) is an association of physicians with interest in the function and diseases of the upper aerodigestive tract and the relevant applications of endoscopy. The goals of ABEA are to educate and update physicians in evaluating and managing aerodigestive tract disorders; stimulate and support basic and clinical research; advocate and support endoscopy training in residency and fellowship programs; and provide information useful to patients, industry, scientists, physicians, and other health care professionals at a national otolaryngology meeting.

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American Laryngological Association (ALA)

President: Marvin P. Fried, M.D.
Administrator: Maxine Cunningham
Address: P.O. Box 128186
Voice: (615) 343-0429
Voice: (615) 812-6170
Fax: (615) 322-9102
Internet: www.alahns.org
Last updated: 2011 Jun 30

Description:
The mission of the American Laryngological Association (ALA) is to promote education and research and to disseminate important new scientific information relative to laryngology, which is the study of basic science, evaluation, and management of disorders relating to the larynx. ALA strives to accomplish this mission by promoting and presenting the latest scientific discoveries, publishing peer-reviewed reports, establishing funding sources for pilot research studies that facilitate subsequent funding by the National Institutes of Health, and sponsoring educational seminars and courses as well as public service announcements.

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American Speech-Language-Hearing Association (ASHA)

Executive Director: Arlene A. Pietranton, Ph.D., C.A.E.
Public Information Contact: ASHA Action Center
Address: 2200 Research Boulevard
Voice: (301) 296-5700
Toll-free Voice: (800) 638-8255
TTY: (301) 296-5650
Internet: www.asha.org
Last updated: 2011 Jun 30

Description:
The mission of the American Speech-Language-Hearing Association (ASHA) is to promote the interests of and provide the highest quality services for professionals in audiology, speech-language pathology, and speech and hearing science, and to advocate for people with communication disabilities. Holds annual conference; contact ASHA for date and location. Professional brochures/pamphlets, journals, and professional/consumer online publications are available. Some materials are available in Spanish.

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American Speech-Language-Hearing Foundation (ASHFoundation)

Executive Director: Nancy J. Minghetti
Public Information Contact: Emily Diaz
Address: 2200 Research Boulevard
Voice: (301) 296-8703
Last updated: 2011 Jun 30

Description:
The American Speech-Language-Hearing Foundation (ASHFoundation) supports the advancement of knowledge and the improvement of practice in serving children and adults with speech, language, or hearing disorders. ASHFoundation supports research, master’s and doctoral scholarships, and special projects that facilitate innovative directions in the field of communication sciences and disorders. This private organization is supported, in part, by the tax-deductible contributions of individuals, corporations, and organizations. See the website for information and funding guidelines.

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Association for Research in Otolaryngology (ARO)

President: Debara Tucci, M.D.
Executive Director: Darla M. Eastlack
Address: 19 Mantua Road
Voice: (856) 423-0041
Fax: (856) 423-3420
Internet: www.aro.org
Last updated: 2011 Jun 30

Description:
The Association for Research in Otolaryngology (ARO) is an international scientific society of researchers who investigate basic science and clinical problems associated with hearing, speech, balance, taste and smell, and diseases of the head and neck. ARO’s goals are to encourage both basic and clinical research in the broad field of otolaryngology and related areas and to foster friendly assembly and stimulate scientific interest among its members. Holds mid-winter research meeting; contact ARO for date and location.

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Centers for Medicare and Medicaid Services (CMS)

Acting Administrator: Charlene Frizzera
Public Information Contact: Peter Ashkenaz, Acting Director
Address: 7500 Security Boulevard
Voice: (410) 786-3000
Voice: (202) 690-6145
Toll-free Voice: (877) 267-2323
Last updated: 2011 Jun 30

Description:
The Centers for Medicare and Medicaid Services (CMS) is a federal agency with responsibilities that include the Medicare and Medicaid programs, two national health care programs benefiting about 75 million Americans; the State Children’s Health Insurance Program; regulation of all non-research laboratory testing performed on humans in the United States; and programs assisting millions of Americans and small companies in obtaining health insurance coverage. The website www.cms.gov targets health care providers and the public, while www.medicare.gov offers information about services to beneficiaries. Publications are available.

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CHERAB Foundation

Founder: Lisa Geng
Address: P.O. Box 8524
Voice: (772) 335-5135
Last updated: 2011 Jun 30

Description:
The CHERAB Foundation (CHERAB) is a worldwide nonprofit organization that helps individuals with speech and language delays and disorders through communication help, education, and research that is apraxia-based. Its area of emphasis is verbal and oral apraxia, which are severe neurologically based speech and language disorders that hinder children's ability to speak. The foundation is committed to assisting with the development of new therapeutic approaches to, and prevention and cure of, neurologically based speech disorders. CHERAB brings together parents and medical, research, and educational professionals to help give a voice to all. Sign up to receive updates at http://twitter.com/TheLateTalker.

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Childhood Apraxia of Speech Association of North America (CASANA)

President: Mary Sturm, M.D.
Public Information Contact: Kathy Hennessy
Address: 416 Lincoln Avenue
Voice: (412) 343-7102
Last updated: 2011 Jun 30

Description:
The Childhood Apraxia of Speech Association of North America (CASANA) is the only national nonprofit 501(c)(3) charity representing the needs of children with apraxia and their families. CASANA’s goal is to provide credible, reliable, and comprehensive information on apraxia of speech in children. Guided by a professional advisory board of experts in childhood apraxia of speech, CASANA offers information and resources based on the current prevailing professional literature and expert opinion. CASANA raises awareness and provides online services, educational training, workshops for professionals and parents, and research support. Educational DVDs are available on topics that include an introduction to childhood apraxia of speech, treatment strategies, and ways to help children with apraxia practice speaking at home and in the community.

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Council of Academic Programs in Communication Sciences and Disorders (CAPCSD)

President: Larry Small, Ph.D.
Executive Administrator: Frances Laven, M.S.
Address: P.O. Box 26532
Voice: (952) 920-0966
Fax: (952) 920-6098
Internet: www.capcsd.org
Last updated: 2011 Jun 30

Description:
The Council of Academic Programs in Communication Sciences and Disorders (CAPCSD) is an organization of university programs in speech-language pathology; audiology; and speech, language, and hearing sciences. It represents more than 2,000 faculty and administrators from universities in the United States and abroad. CAPCSD advocates for academic programs in communication sciences and disorders and facilitates information exchange among programs and personnel. It also serves as an advisory group to professional associations, legislative bodies, and government agencies. Holds annual conference; contact CAPCSD for date and location. A professional directory, brochures/pamphlets, and reports are available.

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Disability Rights Office, Consumer & Governmental Affairs Bureau, Federal Communications Commission (FCC)

Chief: Thomas Chandler
Address: 445 12th Street, SW
Voice: (202) 418-2516
Toll-free Voice: (888) 225-5322
TTY: (202) 418-0189
Toll-free TTY: (888) 835-5322
Fax: (866) 418-0232
Last updated: 2011 Jun 30

Description:
The Disabilities Rights Office, housed within the Consumer and Governmental Affairs Bureau at the Federal Communications Commission (FCC), ensures that FCC actions and policies enable people with disabilities to have the same access as everyone else to telecommunications. FCC implements mandates for nationwide telephone relay services, accessibility, and usability of telecommunications wireline and wireless products and services. These services include hearing aid compatibility of phones, closed captioning of television programming, and accessibility of emergency information on television.

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Disability Rights Section, Civil Rights Division, U.S. Department of Justice (DOJ)

Public Information Contact: Information Specialists
Address: 950 Pennsylvania Avenue, NW
Toll-free Voice: (800) 514-0301
Toll-free TTY: (800) 514-0383
Fax: (202) 514-0404
Internet: www.ada.gov
Last updated: 2011 Jun 30

Description:
The Disability Rights Section (DRS) is part of the Civil Rights Division of the U.S. Department of Justice (DOJ). DRS focuses on all disabilities and is especially knowledgeable about the interpretation of the Americans with Disabilities Act of 1990. The organization offers an information line for all inquiries as well as assistance to state and local government entities, private-sector business professionals, and the general public. Fact sheets, brochures/pamphlets, online publications, and a professional report are available. Some materials in Spanish and other languages are available.

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Job Accommodation Network (JAN)

Co-directors: Anne Hirsh and Lou Orslene
Address: P.O. Box 6080
Toll-free Voice: (800) 526-7234 or (800) ADA-WORK (232-9675)
Toll-free TTY: (877) 781-9403
Fax: (304) 293-5407
Internet: www.jan.wvu.edu
Last updated: 2011 Jun 30

Description:
The Job Accommodation Network (JAN) is funded by the U.S. Department of Labor’s Office of Disability Employment Policy. JAN is an information and consulting service that provides users with individualized solutions for workplace accommodations. JAN also provides information regarding the Americans with Disabilities Act, the Rehabilitation Act, and other disability-related legislation. In addition, JAN consultants have access to a vast network of resources, organizations, support groups, government agencies, and more that can provide assistance to persons with disabilities. JAN is used primarily by employers, rehabilitation professionals, and individuals with disabilities. All services are free and confidential. Professional/consumer publications are available.

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National Center for Voice and Speech (NCVS)

Director: Ingo Titze, Ph.D.
Public Information Contact: Eric Hunter
Address: University of Utah, Vice President for Research, 201 Presidents Circle Room 210
Voice: (801) 596-2012
Fax: (801) 585-6212
Internet: www.ncvs.org
Last updated: 2011 Jun 30

Description:
The National Center for Voice and Speech (NCVS) is an interdisciplinary team of investigators and health care professionals dedicated to vocology, which deals with the powers, limitations, and enhancement of voice and speech. A primary outreach of NCVS is the Summer Vocology Institute, which provides background in vocology and related topics as well as real-world experience in applying those concepts in laboratory, performance, and health services settings. NCVS is headquartered at the University of Utah, under its Vice President for Research, with active associates in several universities across the country. Professional/consumer publications are available, with some materials in Spanish and French.

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National Dissemination Center for Children with Disabilities (NICHCY)

Director: Elaine M. Mulligan
Information Specialist:
Address: 1825 Connecticut Avenue, NW, Suite 700
Voice: (202) 884-8200
Toll-free Voice: (800) 695-0285
TTY: (202) 884-8200
Toll-free TTY: (800) 695-0285
Fax: (202) 884-8441
Internet: nichcy.org
Last updated: 2011 Jun 30

Description:
The National Dissemination Center for Children with Disabilities (NICHCY) is a national information and referral center that provides information on disabilities and disability-related issues to families, educators, and other professionals. With a special focus on children and young adults ages birth to 22, NICHCY answers questions in both English and Spanish. Fact sheets on specific disabilities, state resource sheets, and information about the Individuals with Disabilities Education Act are available. All NICHCY publications are available online at www.nichcy.org/publications.

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National Institute on Deafness and Other Communication Disorders (NIDCD)

Director: James F. Battey, Jr., M.D., Ph.D.
Public Information Contact: Susan Dambrauskas, Chief, Office of Health Communication and Public Liaison
Address: Office of Health Communication and Public Liaison, 31 Center Drive, MSC 2320
Voice: (301) 496-7243
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 402-0018
Last updated: 2011 Jun 30

Description:
The National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health, supports and conducts research and research training on the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language. The NIDCD develops health information based on scientific discovery and disseminates it to the public. In October 2008, the NIDCD launched It's a Noisy Planet. Protect Their Hearing (www.noisyplanet.nidcd.nih.gov). This national campaign is designed to increase awareness among parents of youth ages 8 to 12 about the causes and prevention of noise-induced hearing loss. The NIDCD provides a toll-free telephone service through its information clearinghouse. Fact sheets, brochures, teaching curricula, and reports are available, with many in Spanish.

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National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse

Project Officer: Susan Dambrauskas
Project Manager: Charlotte Ball
Address: 1 Communication Avenue
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
Last updated: 2011 Jun 30

Description:
The National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse, a service of NIDCD, is a national resource center for health information on hearing, balance, smell, taste, voice, speech, and language for health professionals, patients, and the public.

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National Organization for Rare Disorders (NORD)

President/CEO: Peter L. Saltonstall
Vice President, Information Services: Mary Dunkle, Vice President for Communications
Address: P.O. Box 1968, 55 Kenosia Avenue
Voice: (203) 744-0100
Toll-free Voice: (800) 999-6673
TTY: (203) 797-9590
Fax: (203) 798-2291
Last updated: 2011 Jun 30

Description:
The National Organization for Rare Disorders (NORD) is a nonprofit voluntary health agency that serves as a clearinghouse for information on rare disorders. A rare disorder is a disease or condition that affects fewer than 200,000 Americans. Cumulatively, there are more than 6,000 rare diseases affecting more than 25 million Americans. NORD is committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, and service programs. NORD administers medication assistance programs for certain rare-disease drugs as well as research grants and fellowships.

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National Rehabilitation Information Center (NARIC)

Project Director: Mark X. Odum
Public Information Contact: Catherine Graves, Library Information Specialist II
Address: 8201 Corporate Drive, Suite 600
Voice: (301) 459-5900
Toll-free Voice: (800) 346-2742
TTY: (301) 459-5984
Fax: (301) 459-4263
Internet: www.naric.com
Last updated: 2011 Jun 30

Description:
The National Rehabilitation Information Center (NARIC) is a library and information center focusing on disability and rehabilitation research. NARIC’s collection contains more than 40,000 documents, both federally funded and commercially produced. NARIC’s information specialists provide quick information and referrals, customized database searches, and document delivery. Internet users can access NARIC’s databases, bulletins, and a live reference chat service at the NARIC website. Referral sheets, general information packets, and customized literature searches are available.

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National Spasmodic Dysphonia Association, Inc. (NSDA)

Executive Director: Kimberly A. Kuman
Address: 300 Park Boulevard, Suite 415
Voice: (630) 250-4504
Toll-free Voice: (800) 795-NSDA (6732)
Fax: (630) 250-4505
Last updated: 2011 Jun 30

Description:
The National Spasmodic Dysphonia Association (NSDA) is a nonprofit 501(c)(3) organization dedicated to advancing medical research into the causes of and treatments for spasmodic dysphonia; promoting physician and public awareness of the disorder through outreach; and sponsoring support activities for people with spasmodic dysphonia and their families through educational materials, annual symposiums, support groups, and online resources. NSDA is the only organization that is dedicated solely to spasmodic dysphonia.

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Office of Special Education Programs (OSEP), Office of Special Education and Rehabilitative Services (OSERS)

Acting Director/Official Deputy: Patricia J. Guard
Address: U.S. Department of Education, 550 12th Street, SW, Room 4109
Voice: (202) 245-7459
Fax: (202) 245-7616
Last updated: 2011 Jun 30

Description:
The Office of Special Education Programs (OSEP), an office within the U.S. Department of Education, is dedicated to improving results for infants, toddlers, children, and youth with disabilities—including communication disorders—from birth through age 21 and providing leadership and financial support to assist states and local districts. OSEP awards formula grants to states as well as discretionary grants to institutions of higher education and other nonprofit organizations to support research, demonstrations, technical assistance and dissemination, technology and personnel development, and parent-training and information centers. Professional and consumer publications are available.

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Recurrent Respiratory Papillomatosis Foundation (RRPF)

Director: Bill Stern
Address: P.O. Box 6643
Voice: (609) 530-1443
Fax: (866) 498-7559
Internet: www.rrpf.org
Last updated: 2011 Jun 30

Description:
The Recurrent Respiratory Papillomatosis Foundation (RRPF) was created to provide family support; promote public awareness; and aid in the prevention, cure, and treatment of recurrent respiratory papillomatosis (RRP), a rare disease that affects the voice. The most common symptoms of RRP are a hoarse or strained voice, dysphonia (difficulty in speaking), or aphonia (loss of voice). The organization focuses primarily on networking within the RRP community, including patients, families, medical practitioners, and researchers. Its goal is to stimulate more RRP-related research that may lead to more effective treatments and, ultimately, a cure for this disease. Professional/consumer brochures/pamphlets are available.

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Society for Ear, Nose, and Throat Advances in Children (SENTAC)

President: David Parons, M.D.
Address: Charlotte Eye, Ear, Nose, and Throat Associates, 6035 Fairview Road
Voice: (704) 295-3000
Fax: (704) 295-3220
Internet: www.sentac.org
Last updated: 2011 Jun 30

Description:
The Society of Ear, Nose, and Throat Advances in Children (SENTAC) is an interdisciplinary society of health professionals who share an interest in ear, nose, and throat diseases in children, including communication disorders. Its membership includes physicians, nurses, speech therapists, audiologists, and social workers. The annual meeting provides a forum for the presentation and exchange of ideas and information; contact SENTAC for date and location. A professional newsletter, directory, and brochures are available.

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The Voice Foundation

Chairman: Robert T. Sataloff, M.D., D.M.A.
Executive Director: Maria Russo, MM Voice
Address: 1721 Pine Street
Voice: (215) 735-7999
Fax: (215) 735-9293
Last updated: 2011 Jun 30

Description:
The Voice Foundation is the world’s oldest and leading organization dedicated to voice medicine, science, and education. This nonprofit organization is committed to funding research, sponsoring an annual international symposium, publishing professional and scientific publications and audiovisual materials, and disseminating knowledge internationally. Holds annual symposium (Care of the Professional Voice) in Philadelphia, usually the first week of June; contact the Voice Foundation for date and location.

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Voice Academy

Project Director: Julie Ostrem, M.B.A.
Public Information Contact: Julie Ostrem
Address: University of Iowa, Speech Pathology & Audiology
Voice: (319) 335-6600
Fax: (319) 335-6603
Last updated: 2011 Jun 30

Description:
The Voice Academy is a self-paced, no-cost website created to help school teachers prevent and self-manage voice disorders, which, unfortunately, are common in the profession. This website features a virtual school where teachers explore topics such as voice production basics, safe classroom acoustics, amplification system use, and the healthy body/healthy voice connection. The website also features an auxiliary curriculum for school-based speech-language pathologists or other advocates to present a 50-minute healthy voice seminar to their teacher colleagues.

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Voice Health Institute

President: John L. Ward, Ph.D.
Address: One Bowdoin Square, Floor 11
Voice: 617-720-5000
Last updated: 2011 Jun 30

Description:
The Voice Health Institute (VHI) is an independent, 501(c)(3) nonprofit private foundation founded in 2003, and formerly known as the Institute of Laryngology and Voice Restoration (ILVR). The VHI is dedicated to advancing laryngology and voice restoration through sponsoring innovative basic and translational research as well as promoting education and outreach programs. The VHI works in cooperation with the Massachusetts Institute of Technology and other institutions.

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